DSM-5 Changes (statement from ASO Board of Directors))

Mental health professionals use the Diagnostic and Statistical Manual of Mental Disorders (DSM) to identify and diagnose Autism Spectrum Disorders, and other mental health issues.

According to a statement issued on December 1, 2012 by the American Psychiatric Association (APA), changes to the fifth edition of the DSM, which will be published in May 2013, have now been approved. It is the first major rewrite in almost 20 years.

From Asperger’s Syndrome to Autism Spectrum Disorder

Asperger’s Syndrome was first identified many decades ago but was not acknowledged in English language countries until the 1980s. It has only been formally diagnosed since 1994, when it was added to the DSM-IV. With changes to the DSM-5 however, the name “Asperger’s Syndrome” will fall away and will instead be incorporated under a unified diagnosis of Autism Spectrum Disorders. The term Autism Spectrum Disorder (ASD) is already widely used, and going forward will refer to those who have severe autism as well as others that are on the higher functioning end of the spectrum.

When asked to describe Asperger’s Syndrome, most explain it as a higher functioning form of autism. As such, folding it into the Autism Spectrum Disorder banner may make it easier for people to understand what it is.

According to Dr. Catherine Lord, an autism expert at Weill Cornell Medical College in New York who was on the APA autism task force, one of the motivations for making the change is the current lack of services for children and adults diagnosed with Asperger’s Syndrome, as compared to those with an autism diagnosis. This was reinforced by Dr. David Kupfer, who chaired the APA task force in charge of revising the manual, and is a psychiatry professor at the University of Pittsburgh. He said, “Revisions were made not to expand the number of people diagnosed with mental illness, but to ensure that affected children and adults are more accurately diagnosed so they can get the most appropriate treatment.”

Dr. Lord also expressed that anyone who met the criteria for Asperger’s Syndrome in the DSM-IV would not lose their diagnosis, as they would fall under the Autism Spectrum Disorder. Our understanding is that those who already have a diagnosis of Asperger’s Syndrome could have that information noted on their medical records, and as part of any future diagnostic evaluations.

Criteria for a diagnosis of Autism Spectrum Disorder

In addition to folding both Asperger’s Syndrome and Autistic Disorder under a single banner, the APA has also redefined the criteria for receiving a diagnosis of an ASD.

Previously, traits that fell under social impairment, communication deficits and repetitive/restricted behaviours will now fall under two distinct categories – social communication impairment and repetitive/restrictive behaviours. Our understanding is that there will also be severity grades, ranging from level 1 for those that require support; level 2 for those that require substantial support; and level 3 for those that require very substantial support.

The APA posted the following information on the DSM-5 website about the criteria for diagnosis:

“Because the draft diagnostic criteria posted most recently on www.dsm5.org are undergoing revisions and are no longer current, the specific criteria text has been removed from the website to avoid confusion or use of outdated categories and definitions.”

The impact of DSM-5 on those with Asperger’s Syndrome

Many members of the Asperger’s community have asked us what we believe are the implications of the removal of Asperger’s Syndrome from the DSM-5. There are a few points of thought, many of which will be clarified in the months leading up to the DSM-5 being published. These include:

While Asperger’s Syndrome has been diagnosed since 1994, there are still many people who do not fully understand what it is. Often, the easiest way to explain it to someone has been to reference it as a higher functioning form of autism. With the DSM-5, the change to an umbrella category of Autism Spectrum Disorder may help to clarify the explanation.
Access to services for those diagnosed with Asperger’s Syndrome has been limited as compared to those who have autistic disorder or who are on the lower functioning end of the spectrum. Our hope is that the changes made will make it easier for those with Asperger’s Syndrome to get greater access to supports, services and funding to ensure they can become contributing members of society.

According to the DSM-5 committee, individuals with a current diagnosis on the autism spectrum – including those with Asperger’s Syndrome – will retain an ASD diagnosis.
Questions have been raised about the social impact of removing Asperger’s Syndrome from the DSM. Those that self identify as “Aspies” are concerned about how they will be known going forward. Even though the formal diagnosis will be Autism Spectrum Disorder, individuals who are familiar with the Asperger’s diagnosis can make reference to it on their medical files and will likely continue to identify with it in the short term.

Changes being made to the DSM bring greater attention to the autism spectrum and Asperger’s Syndrome. Our hope is that greater awareness will mean that those with Asperger’s Syndrome, who previously never had access to services because they were less visible, will now receive the supports and services they need.

Impact of the DSM-5 on the Asperger’s Society of Ontario

With changes being made to the DSM-5 and the diagnosis of Asperger’s Syndrome falling away, members of our community want to know what the impact will be on the Asperger’s Society of Ontario. Our organization is still relevant and viewed as a much-needed resource for those in this province who have been diagnosed with Asperger’s Syndrome.

In addition, as individuals diagnosed with Asperger’s Syndrome and those classified as having High Functioning Autism are so close to one another in terms of challenges, traits, opportunities, etc. (the biggest difference being no language delay in those diagnosed with Asperger’s Syndrome), the supports we provide are relevant to both communities. As such, our board of directors is examining if there may be an opportunity for our organization to focus on those who were previously diagnosed with Asperger’s Syndrome, as well as those with an Autism Spectrum Disorder who are higher functioning or perhaps meet the level 1 support criteria identified above.

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